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TNBC in supraclavicular lymph nodes *only*??

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ap3
ap3 Member Posts: 20

Hi All,

My wife recently got NED from stage 4 TNBC that was in her spine. However, her most recent PET showed 3 lymph nodes on either side of her neck with activity, and a biopsy confirmed cancer.

What is baffling us is that there's no sign of cancer elsewhere. How does cancer get into the lymph nodes without a tumour being somewhere to shed cancer cells?

We're waiting on receptor status and praying it's flipped to ER+ which it was when initially diagnosed.

Has anyone else been in this situation? Does being on both sides mean anything?

Cheers,

Andy

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  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Andy, I'm sorry to hear about your wife's recurrence in her lymph nodes. If she has had MBC (you mention she had it in her spine but was NED ) she still has circulating cancer cells in her body. I had distant nodal MBC discovered in 2019. I had scans show that the treatment I am on has been working and I have NEAD (no evidence of active disease ). My oncologist has told me that it's great to be NEAD but the cancer cells are in my system, just haven't found a new place to set up shop yet or are too tiny to get picked up on a scan. It's good that your wife's MO has ordered a biopsy. I don't know if the fact that it is bilateral means anything in this case because once she was found to be stage IV , it's stage IV even with NED/NEAD (from what I know ). Let us know when you have biopsy results. What treatment is she on

  • moth
    moth Member Posts: 3,293
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    well it's the same as when those of us go from successful early atage treatment, cancer removed, chemo etc. There's no tumor anywhere but them we get a recurrence.

    Scans can't see individual cells. Cancer cells can hide & go dormant & then turn back on. Once you have mets, the research suggests there are lots of the original tumor cells in the body. We don't have the technology to find them until they're a couple mm & by then that's a huge number of cells.

  • ap3
    ap3 Member Posts: 20
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    Thanks both, I guess that's what's happened. When it came back in her spine she was put on Taxol and Carboplatin. When she got to NED, they stopped the Taxol, but kept going with the Carbo as maintenance. I guess that's stopped working... :(

    I was probably being very naïve, but I had a vision of it just staying gone.

  • cowgal
    cowgal Member Posts: 625
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    ap3 - You weren't being naive, just hopeful and there is nothing wrong with that. My cancer came back in my collarbone. My radiation oncologist thinks that I had a cancer cell hanging out outside of the area that was radiated my first time with cancer at stage 2B. After I completed my tamoxifen and aromatase inhibitors, it started to grow. Hopefully, they can do SBRT or something to zap those suckers and get her back to NEAD!

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Andy, I am sorry. You weren't being naive. Like cowgal said hopefully they can do some radiation or something to zap these and she will be NEAD again. It is good news that no other areas were found! Keep visualizing that it will be gone again as soon as they decide the best course of treatment.

  • ap3
    ap3 Member Posts: 20
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    Thank you both. Hopefully it can be zapped, and if we're really lucky, switch back to hormone positive.

    It's like a horrible version of whack-a-mole!